My neuro patch experience has just started.

[steve57]

Hi, I'm a 55yr old male and have had rls since my late teens. I've just started the neuro patch yesterday (19/9/12) on the starter dose of 1mg. I decided that I need to keep a diary of my experiences with the patch as a source of information I can take to my doctor in the future. It would also help me as my memory is quite poor anyway. If my experiences can be helpful to others who may be considering using this patch I would be more than happy to share them with you. I could do this either through this community blog or in a message.

I do not have any medical training or experience whatsoever, so I can only talk about my own rls experiences.

Here is a quick overview of my very limited rls treatment prior to the patch. After being on a mixture of ropinirole and procyclidine successfully, the rls started gradually returning stronger than ever. Coupled with this it had also spread to my arms. I don't know how other fellow sufferers feel, but I am finding the rls in my arms is becoming more difficult to deal with as each day passes.

Both my arms and legs are driving me to despair about the horrible future that I believe lies ahead. The lack of sleep (12hrs per week is a good week) is absolutely soul destroying, but now I am having to try to cope with involuntary arm movements which make normal daily living and doing simple tasks very worrying.

Through my neurologist I requested that I be allowed to increase my ropinirole from the maximum recommended dose of 4mg to 6mg. He agreed to let me try it and at first it did help but only marginally. I had been on this new dose for a few months when my rls began to get out of control. I asked my gp if taking the extra ropinirole could actually make my rls worse and he said it could. I'm not a doctor, but through the helpful people on this site helping me with their advice, I think this is called augmentation. I then started having halucinations which were diagnosed as being caused by my rls medication.

Now onto the neuro patch.

I hadn't even heard of the neuro patch until I found this site last month and asked my neurologist if I could try them. So my first one went on last night.

As I mentioned earlier about my lack of sleep, I need to say that every few weeks I am so exhausted my body decides enough is enough and I go into a deep and prolonged sleep. I either had one of these last night, or hopefully it was as a direct result of the neuro patch. I feel a bit"woolly" headed this morning - my wife says that is nothing new for me anyway but at least I have had some much needed sleep.

I still have my rls but I feel that some of the heat in my legs has lessened quite a bit. As it is only 15hrs since I put the patch on it is much to early to notice any big changes in my rls I think.

I did however wake up once to find myself on the lounge floor, much to my dogs delight. Whether this was a side effect remains to be seen.

The list of side effects I had read about, both on the internet and the leaflet that came with the patches, is worrying me to be honest, but I did try to make a balanced judgement before using them. As I haven't got any quality of life because of my rls I have got to give these patches a chance, but I do have to balance this with looking after my sick wife 24/7.

Up to now that is all I have experienced, but it has only been a matter of hours. Plus I am only on the starter dose of 1mg.

As I mentioned earlier I will be happy to keep up this blog if anyone would find it helpful.

I promise it won't be as long-winded as this first one

Best wishes to all,

Steve.

[Hidden]

Hi Steve, i am pleased you had a good nights sleep, i am sure it was the patch that did that.

If we took notice of all the side effects in the leaflet of ANY med. that includes OTC meds. then we wouldnt take anything and would suffer because of it. They have to cover ALL side effects in the leaflet, It might have been just one person who experienced one of those side effects, so they have to list it. That leafelt is there so you are aware of what side effects can happen.

It will take the full 24hrs before the patch is settled.

I am just having a drug holiday from the patch, as i had reached the 3mg allowed to treat RLS.. I am now taking pramipexole for hopefully a couple of weeks then go back to the patch. DONT go any higher than the 3mg patch, it will only work for a while before the RLS symptoms come back with avengence as you found with the ropinerole. The side effects will for most become apparent...when going higher than is allowed...

Good luck, i hope it continues to work for you.

Irene...

[steve57]

Thank you Irene, I won't make the same mistake again as I did with the ropinirole. I'm due to put the second patch on in a couple of hours so hopefully it will be fully in my system and I'll be able to see some good results soon.

Hope your drug holiday goes well

Steve

[nightdancer]

HI, Steve,

The side effects of the patch should be les than when you are such a high dose of Requip. Procyclidine is purely supposed to be for parkinson's Disease, not RLS. It works on your muscles, and oddly enough this calls of med is one that could make your RLS worse. An anticholinergic works on the muscle contractions that tighten up with parkinson's. RLS is not muscular, it is neurological. many plain muscle relaxers can make RLS worse. By the way, the Procyclinidine has been taken off the market in the US. Not sure why, because I have to look it up. My father had Parkinson's before he died, so I am used to that one, too.

[steve57 in reply to nightdancer]

Hiya, sorry to hear about your father and him having Parkinson's as well. I stopped the procylidine 3 weeks ago in the belief that I was starting on the patch a couple of days later. It has taken this long to get the patches because of a mix-up between my neurologist and my G.P. I stayed on the ropinirole but lowered the dose and finally stopped them completely on Tuesday and started the patch yesterday. Thank you very much for your reply though. My rls came back quite badly about an hour before I was due to change the patch and it's been 1 1/2hrs since I put the new one on and it hasn't calmed down yet. I'll just have to see how things go and hope for the best.